Monday, November 02, 2009

Walking for Epilepsy

From Joey's friends, in response to my question, "Where were you guys in this picture ?"
JR: "That trip we went to Amsterdam, Brugges, Paris, Florence and Cinque Terra. My guess would be Amsterdam."
Theo: "I think JR's right. Judging by the buildings and the bikes, and the fact that we're all bundled up, it has to be Amsterdam. It started snowing there right before we returned home."
***
A month ago, I met with the leaders of the Epilepsy Foundation of Virginia. It was my first ever contact with the Epilepsy Foundation. Though our son had epilepsy since he was 12 years old, it was so well-managed by medication, that we were never the ones, of the over 3 million Americans afflicted, who looked for help or support. Fortunately, he wasn't one of those children who have random, uncontrollable seizures. His were almost predictable--at least he knew when one was coming. And they were infrequent, and almost always at bedtime when the lights went out. We hated to see him have a seizure-- it was frightening and it hurt to see his precious body unconscious and tightly clinched in an almost fetal position. But death? No, we didn't think about that.

As the doctor told me when he was young, "The worst thing that can happen is that he will have a seizure! As long as he doesn't hit his head, he'll sleep it off and be okay after a few hours." The doctors told us Joey could do anything but skydive or scuba dive. Back then, the goal was to prevent Joey from identifying too strongly with his epilepsy, to encourage him to live a full and active life. My job was to not "over-mother" him, but to let him grow up unfettered by fear. I think we more than succeeded at that, but now we sadly know how very ignorant we were about the true danger epilepsy posed to Joey.

That was before the syndrome that killed him had been identified and labeled. That was before we had heard the term SUDEP-- Sudden Unexplained Death by Epilepsy. We discovered that term the day after Joey died, when we were in a state of shock and numb disbelief and googling the words "death by epilepsy". That was before we knew that our son, with his nighttime seizures, was at higher risk for sudden death. That was before we ever heard the unimaginable-- that epilepsy kills as many people in a year as breast cancer.

On Sunday, our family is going to walk for epilepsy. We are going to share our tragic story and hopefully we can increase awareness about SUDEP. We hope we can spare others from the heartbreak we have been through.











Please check out our fundraising site in the sidebar on the right.

9 comments:

Gannet Girl said...

Love to you as you do this difficult thing.

sharon said...

I think it is brave of you to do this, and it will be hard. You walk and we will be praying. Love Sharon

Maisha Bonnie said...

I also think it's wonderful that you're doing this and will be praying too.
love you.

karen gerstenberger said...

I'm excited for you to share Joey's story (and yours) with a group of people who will especially understand, who will "get it," who will be blessed by hearing about him, as I continue to be blessed by this blog.
You will be blessed, too...whenever I have shared Katie's story from a podium (as nervous as I am EVERY TIME), it has been a blessing.
Fundraising follows awareness, naturally. Your gift of your story is priceless. Hugs to you!
Where was the photo on the street taken? He is so gorgeous. I love his Burberry scarf and his sweet smile!

flowergardengirl said...

All these colors popped right out at me when I first arrived. I love the new header. Makes Joey seem happy today. It was nice to arrive with something to get involved with. it felt good to be a part of Joey's purpose to help others.

Anonymous said...

I love this picture of Joey walking. Love it!

lvi

Anonymous said...

Thanks Karen for sharing the source of your grief.Very hard!I look forward to helping with your cause.
Love you,
Gary

Anonymous said...

Wow I had no idea so many people died of epilepsy every year. I absolutely love that picture of Joe in the Canyon...I don't know if I've ever seen it.

Love,
Kevin

sharon said...

I have been thinking and praying for you all week. I think this is
so amazing that you have connected with others. It will be a good thing for you. I think about brain tumors and how little support
they get but just can't deal with that yet. Maybe it would help!
Im praying you have a beautiful day for your walk. Will be looking for pictures.